Low Frequency Tinnitus

[Christiaan]

Can you explain this sentence? I don't quite get what you are trying to say.

Actually, I'm on the list for the treatment at UZA. I'm scheduled for August.

That said: Dr. De Ridder wasn't a big fan of the current setup of UZA's treatment. He said: "I'm working on a new protocol in New Zealand that shows a lot more promise."

Sorry for the confusion. What I mean to say is that it is ironic in the sense that Tegretol should help you, but actually might have an opposite effect on your tinnitus. And the last thing you need is a worsening, given your particular situation.

I am wondering what he thinks about the shortcomings of the current trial in Antwerp. I've read somewhere that he wants to combine Ketamine and a similar device like HD-tDCS for a new trial. Is this what he had in mind?

Anyway, nice to hear you could get help ASAP. I probably have to wait late August/early September for treatment.

 

[Ben Winders]

What I mean to say is that it is ironic in the sense that Tegretol should help you, but actually might have an opposite effect on your tinnitus. And the last thing you need is a worsening, given your particular situation.

Ha - so you know and investigated Tegretol but advise against it for my particular case since it might cause worsening if my buzz is also noise-induced (I have -20 dB at 125 Hz) which we (me nor De Ridder) are not even sure about.

I am wondering what he thinks about the shortcomings of the current trial in Antwerp. I've read somewhere that he wants to combine Ketamine and a similar device like HD-tDCS for a new trial. Is this what he had in mind?

Unsure - he just said the results weren't very good.

 

[Christiaan]

Ha - so you know and investigated Tegretol but advise against it for my particular case since it might cause worsening if my buzz is also noise-induced (I have -20 dB at 125 Hz) which we (me nor De Ridder) are not even sure about.

Unsure - he just said the results weren't very good.

Take it easy my friend. Maybe you've read too much between the lines here. I've mentioned this part in my previous response just to be sure that I'm not giving out advice as if I'm a know-it-all but rather assume you're right on the ototoxic component of Tegretol:

''If that's true[assuming you're right that Tegretol is possibly ototoxic] , then Tegretol is ironically the last thing you need.''

Anyway, I do hope that dr. De Ridder might shed some light soon enough about what his next approach would be.

 

[Ben Winders]

Take it easy my friend. Maybe you've read too much between the lines here. I've mentioned this part in my previous response just to be sure that I'm not giving out advice as if I'm a know-it-all but rather assume you're right on the ototoxic component of Tegretol:

''If that's true[assuming you're right that Tegretol is possibly ototoxic] , then Tegretol is ironically the last thing you need.''

Anyway, I do hope that dr. De Ridder might shed some light soon enough about what his next approach would be.

Gotcha - apologies. I'm not my calm self (lately) - 12 months in and mentally I'm worse off than 6 months ago. Weird because the tinnitus (hiss) hasn't become louder and the hum hasn't become more frequent either.

 

[Christiaan]

Gotcha - apologies. I'm not my calm self (lately) - 12 months in and mentally I'm worse off than 6 months ago. Weird because the tinnitus (hiss) hasn't become louder and the hum hasn't become more frequent either.

No problemo @Ben Winders. I deeply understand that tinnitus can sometimes get the best of us. It's definitely not easy but at least we can comfort ourselves with the thought that some bright people like Dr. De Ridder and Dr. Jacquemin are doing everything they can to help us out.

 

[Matchbox]

Tegretol is Carbamazepine and yeah, there's a few stories of it causing hearing loss if you're on it for a long, long time. It also screws up your sodium balance (which can also screw up signals) and can result in auditory pitch changes (apparently that fun side effect is only when on the drug and doesn't stick around coming off). I think it's a blunt force sodium channel blocker.

Definitely a "use the lowest dose that works and only for a bit" kind of drug. Meant primarily for typewriter tinnitus but I'd guess any sporadic tinnitus could be affected.

But if you take a course and taper off and the hum doesn't come back, it sounds worth the risks to me.

 

[Maria Francesca]

(In a not-aggressive voice) so all this time you were sitting on a cure for low buzzing and you never thought about mentioning it to us ?

More seriously though, I hope you find the time to answer these questions:

1) If you have the buzzing, does it stop momentarily when you shake your head in a "no" motion, or when someone talks to you?

2) What secondary effects are you talking about regarding Tegretol? Does the Tegretol fully stop the buzzing? Say: if you take Tegretol, can you just sleep on your bad side again or sleep without white noise without awakening the buzzing?

3) Do you also have the buzzing after driving in a car and then when you go listen for it in a quiet room it starts to stutter after 1 minute before fully stopping? Because you say "I have to be careful not to press against that ear or sleep on that ear side as it awakes the buzzing", I'm assuming you don't have the buzzing all the time. Only when you "awaken" it.

For me low buzzing is a consequence of the hissing, so if I can mitigate the hissing, the low buzzing goes away or only appears if stimulated...

1) low buzzing goes away if I shake my head but not if someone talks to me.

2) secondary effects of Tegretol were head tinnitus similar to the one I used to have when drinking too much alcohol and some mouth burning. With Tegretol/Trileptal I have no "spontaneous" buzzing during the day, but yes can be awakened. Currently I still prepare my noise app with zero volume before going to bed, ready to increase the volume in case I notice it. Before it was all nights, now one or two per week but still I should avoid to sleep on the right side.

3) sitting in a car, bus or being subjected to other form of vibrations make my hissing worse and awake the buzzing.

At least I am lucky my neurologist believes me.

 

[Maria Francesca]

@Ben Winders, I was reading your past posts.

You also have electric static tinnitus. How did you get it? Is it reactive to noises? Can you mask it? What bothers you more, the static sound or the low buzzing?

I am most bothered/obsessed by my hissing as it cannot be masked.

 

[Ben Winders]

@Ben Winders, I was reading your past posts.

You also have electric static tinnitus. How did you get it? Is it reactive to noises? Can you mask it? What bothers you more, the static sound or the low buzzing?

I am most bothered/obsessed by my hissing as it cannot be masked.

I'm assuming I got both my static tinnitus and my low buzzing due to acoustic trauma (headphones).

The static hiss for sure is reactive (regular fans, MacBook fan, dishwasher). I'm 12 months in and the reactivity surely has subsided a lot over time. In the beginning even screeching car brakes, or water falling in the sink would hurt, now those don't do it anymore.

The static hiss is masked very easily with bird noise (asoftmurmur.com every night). The low buzzing for sure bothers me more than the static hiss. If I'm feeling good (mentally) my brain is even able to filter out the static hiss on its own (without the help of white noise). The low buzzing, I have no clue how my brain would ever be able to filter that out.

To me it's very interesting that you say the low buzzing is a consequence of the hissing. Especially because you say "I should avoid sleeping on the right side". This means the buzzing comes on when the buzzing ear gets NO input, right ?

That's exactly what mine does too. If I sleep in our very quiet bedroom with no white noise on (I put a low rumbling sound on), I will wake up in the middle of the night with the buzzing in my ear. My ear needs constant input for it to not start rumbling (also mentioned by Prof. Dr. De Ridder that this is in fact something that is "known" and "confirmed" in certain cases).

Are you sure your buzzing doesn't stop every time a word is spoken to you? (Since you also can stop it by shaking.) In between words, it comes back, but when there is input (a word spoken) it momentarily stops.

 

[Maria Francesca]

@Ben Winders, thank you for the birds sound suggestion, I will try this tonight. Last night I had only 1 hour sleep...

In my opinion sleeping on the ear awakes the buzz not because there is no input but because it presses some nerve. The buzzing appears also if I press the ear with my hand. Both hissing and buzzing come together with a physical sensation of tingling in the ear. This is why the neurologist gave me anti-epileptics, and the fact that Tegretol/Trileptal reduced it could be a confirmation that it is a nerve issue. Who knows... I had no noise trauma and I attribute my noise to one week of Levofloxacin, that is known to damage nerves.

Anyway after reading posts from @Greg Sacramento here, tomorrow I am going to do a chiropractor check to understand if there could be some pinched nerve in the cervical.

The buzzing does not stop when someone talks to me, but I cannot confirm 100% as it now has mostly disappeared during the day, to verify it I should provoke it and then ask someone to talk to me. I would not like to try this.

 

[Ben Winders]

@Maria Francesca, is there a reason why you never tried to cover up your hiss with noise that sounds "similar" to it like cicadas or birds or whatever other sound? You say it cannot be masked. Is this due to the loudness or does it behave erratically?

Keep in mind that I can make my hiss a lot louder by starting to UBER focus on it. That's why Deanxit also works wonders for me because it makes you "focus less" on "everything" including the tinnitus. Deanxit won't do me any good for the low hum though, I would assume. BTW - I believe Deanxit is ototoxic... of course...

So if you let loose the birds in your bedroom tonight, focus on the birds, imagine the birds, place your focus outside of your own head, away from the tinnitus. Try to count the different birds you hear, imagine them in the forest... I know it all sounds hippie-dippie, trust me, but it's what works for me, most nights (last week I had 2 sleepless nights in a row, and when I say sleepless, I mean 0 hours, 0 minutes).

Coincidentally I was about to ask you if you have a tingling sensation deep in your (middle) ear... I have those random tingles too, even without the ear buzzing at the time when it tingles.

Hard to describe but it's as if a little muscle is "crawling" a little bit, contracting, wiggling, gently tickling - always feel like I need to go in with a Q-tip to stop the tingling, but then it stops on its own after a few seconds (the tingling doesn't last long).

My buzzing not only starts up when I sleep on my bad ear, it also starts up if I sleep on my good ear and I turn all white noise off, or have it on too low volume. As mentioned I have the birds chirping and a very low (volume) roaring sound playing on my MacBook. I play it at a very low volume, you almost have to focus to be able to hear (at least the low roaring component).

So yes: starving the ear of input the whole night will bring forth the buzzing, for me. That does not necessarily mean it is not pressure-related as sound input obviously equals pressure (sound waves).

At this point, I'm not sure which cause I would prefer. Nerve damage or plain and simple noise damage. For noise damage there seem to be some drugs in the pipeline at least focusing on that.

I'm really interested in trying to get you to sleep - I wonder if you would be able to reproduce what your hissing sounds like by using this white noise generator (and then when you created your hiss, you can select the link "Save in URL" to share it with us here so at least I know what we're up against.

Last note: I'm looking into Turmeric (quick Google shows: "Curcumin may help relieve peripheral neuropathy symptoms" and "Turmeric Compound Found to Regenerate Nerve Stem Cells."

 

[Rinz]

Do any of you also hear a pulsating rhythm related to your heartbeat? Are you also sensitive to particular frequencies? Because you said that listening to a voice temporarily turns off the hum.

For me, I hoped it was a blood vessel or something I heard. But now I realize it must be my own heartbeat which I'm hearing. That probably has a low frequency component in it. My low frequency hum dissappears when certain frequencies are played. When an airplane flies over for example it's temporarily gone.

 

[Ben Winders]

Do any of you also hear a pulsating rhythm related to your heartbeat?

Not me.

You have had low frequency hum since the year 2000?

 

[nocticolor]

Well, after having that low hum for a few days to a week for the first time last month, it just went away for around three weeks.

Last night it started back up and now it sounds like my neighbors have some sort of machinery running again. I honestly have no idea what could have triggered it...

 

[Maria Francesca]

Hi, short update. Birds did not work :-(

Yesterday I went to the chiropractor. He told it is my column... I know I always had bad posture and "sand" in my cervical. He said it is genetic and I need spine adjustments. I was scared to let him touch my spine but I finally did. No change up to now.

I am hesitant to continue as am afraid to worsen the situation. My brother has a similar spine and had tinnitus which faded away within 2-3 years. He did nothing apart taking a vitamin B complex, so maybe it is only a matter of letting time pass. But he had tonal tinnitus.

My hissing is highly variable in intensity and sound during the day.

 

[Ben Winders]

Birds did not work :-(

I would really be interested in hearing what your tinnitus sounds like.

 

[Rinz]

Not me.

You have had low frequency hum since the year 2000?

No, I have had high frequency tinnitus since 2000. The pulsating drone is a recent development since April. Spreek je trouwens ook Nederlands?

 

[Ben Winders]

Spreek je trouwens ook Nederlands?

Gotcha - any special event that brought the drone on?

(Ja - ik ben Vlaming )

 

[Maria Francesca]

Hi,

I cannot reproduce my hissing with the white noise app but it is similar to a combination of the purple and pink bars + random chirping.

I have gone to the second chiropractor session, but still no change.

 

[Ben Winders]

For everyone that can make their low drone stop by putting a finger in their affected ear > try to get custom made silicone earplugs. For me, they lower the drone noise unlike any other earplug that I tried - must be because they are so snug in the ear canal.

That said, for everyone that can stop their drone by putting a finger in their ear, basically all we need is a snug earplug that produces the same "rustling" sound as a finger, and it only needs to be at a very quiet volume cause the finger in ear doesn't really produce a lot of volume either.

 

[Ben Winders]

I have new behaviour to report, since for a couple of days now (since onset 15 months ago) I'm sleeping in complete silence. Even "better": I'm sleeping on my right buzzing ear, so it gets complete silence for 8 hours.

During the night it buzzes, but nothing I can't handle.

But then in the morning, when I open it up again to sounds it starts buzzing very loudly when I make a humming noise, when my girlfriend talks to me, even when I rub my fingers on the bed sheets, or watch a YouTube video (random example from this morning) with someone honking a car horn.

But here comes the real shocker: I can turn off the very loud buzzing by shaking my head (sometimes I have to shake twice).

It is literally as binary as I'm explaining it. I was sitting there on the side of my bed. Playing the car honking on the YouTube video for 2 seconds. My buzzing would go crazy. I let it buzz crazy for as long as I want, I shake my head, and the buzzing goes back to baseline.

Side note: if I wait too long with shaking my head (to turn it off) I'm having much more difficulties turning it off (I need to shake it multiple times, or one day I wasn't even able to turn it off again).

My attempt to an explanation: Because I sleep in total silence the entire night, my ear(s) are hyper sensitive in the morning to anything input it gets and will behave the way I describe above.

@Christiaan - @Kriszti - @Maria Francesca - @nocticolor - @Lukee

 

[Lukee]

I have new behaviour to report, since for a couple of days now (since onset 15 months ago) I'm sleeping in complete silence. Even "better": I'm sleeping on my right buzzing ear, so it gets complete silence for 8 hours.

During the night it buzzes, but nothing I can't handle.

But then in the morning, when I open it up again to sounds it starts buzzing very loudly when I make a humming noise, when my girlfriend talks to me, even when I rub my fingers on the bed sheets, or watch a YouTube video (random example from this morning) with someone honking a car horn.

But here comes the real shocker: I can turn off the very loud buzzing by shaking my head (sometimes I have to shake twice).

It is literally as binary as I'm explaining it. I was sitting there on the side of my bed. Playing the car honking on the YouTube video for 2 seconds. My buzzing would go crazy. I let it buzz crazy for as long as I want, I shake my head, and the buzzing goes back to baseline.

Side note: if I wait too long with shaking my head (to turn it off) I'm having much more difficulties turning it off (I need to shake it multiple times, or one day I wasn't even able to turn it off again).

My attempt to an explanation: Because I sleep in total silence the entire night, my ear(s) are hyper sensitive in the morning to anything input it gets and will behave the way I describe above.

@Christiaan - @Kriszti - @Maria Francesca - @nocticolor - @Lukee

I will try the head shaking. My buzzing has been getting worse lately. Lasts longer and louder.

 

[Christiaan]

I have new behaviour to report, since for a couple of days now (since onset 15 months ago) I'm sleeping in complete silence. Even "better": I'm sleeping on my right buzzing ear, so it gets complete silence for 8 hours.

During the night it buzzes, but nothing I can't handle.

But then in the morning, when I open it up again to sounds it starts buzzing very loudly when I make a humming noise, when my girlfriend talks to me, even when I rub my fingers on the bed sheets, or watch a YouTube video (random example from this morning) with someone honking a car horn.

But here comes the real shocker: I can turn off the very loud buzzing by shaking my head (sometimes I have to shake twice).

It is literally as binary as I'm explaining it. I was sitting there on the side of my bed. Playing the car honking on the YouTube video for 2 seconds. My buzzing would go crazy. I let it buzz crazy for as long as I want, I shake my head, and the buzzing goes back to baseline.

Side note: if I wait too long with shaking my head (to turn it off) I'm having much more difficulties turning it off (I need to shake it multiple times, or one day I wasn't even able to turn it off again).

My attempt to an explanation: Because I sleep in total silence the entire night, my ear(s) are hyper sensitive in the morning to anything input it gets and will behave the way I describe above.

@Christiaan - @Kriszti - @Maria Francesca - @nocticolor - @Lukee

Wow Ben, that's a peculiar kind of buzz you've got there. I've none of those things. Lying on the ''right'' side doesn't do much for me, and the same goes for shaking my head. On the other hand, it does disappear when there's sound (no matter what kind of sound it is).

And... what does your audiologist have to say about hearing aids? Have you already tried those babies?

 

[Ben Winders]

Wow Ben, that's a peculiar kind of buzz you've got there. I've none of those things. Lying on the ''right'' side doesn't do much for me, and the same goes for shaking my head. On the other hand, it does disappear when there's sound (no matter what kind of sound it is).

And... what does your audiologist have to say about hearing aids? Have you already tried those babies?

Yeah... we went there and they said "oh - our tinnitus trained specialist is not here, you have to come back next week." Geez thanks for making us drive there for no reason.

It almost seems like your drone is less aggressive than mine.
Mine goes away sometimes for an hour, but then starts back up if I'm in a silent room for that whole time.

I can't wait to speak to De Ridder again in person (17th August) to baffle him (again) with my story and how my buzz behaves. Last time I spoke to him on the phone he had 2 other medications up his sleeve (other than Tegretol) that he wanted me to try, but I'm not sure if any of those will work. Still pretty sure I just have big fat damage somewhere in the lower frequency (self inflicted) that obviously cannot be fixed with meds (yet).

Still doing my training > spending time in a totally silent room allowing my brain to get used to the drone. Again, there is no way that I'll ever be able to habituate or phase it out, best thing I'm expecting is that I'll just get bored of it... the drone is pretty loud and invasive... not sure how I'll handle this for the rest of my life, but I have to.

 

[Christiaan]

Yeah... we went there and they said "oh - our tinnitus trained specialist is not here, you have to come back next week." Geez thanks for making us drive there for no reason.

It almost seems like your drone is less aggressive than mine.
Mine goes away sometimes for an hour, but then starts back up if I'm in a silent room for that whole time.

I can't wait to speak to De Ridder again in person (17th August) to baffle him (again) with my story and how my buzz behaves. Last time I spoke to him on the phone he had 2 other medications up his sleeve (other than Tegretol) that he wanted me to try, but I'm not sure if any of those will work. Still pretty sure I just have big fat damage somewhere in the lower frequency (self inflicted) that obviously cannot be fixed with meds (yet).

Still doing my training > spending time in a totally silent room allowing my brain to get used to the drone. Again, there is no way that I'll ever be able to habituate or phase it out, best thing I'm expecting is that I'll just get bored of it... the drone is pretty loud and invasive... not sure how I'll handle this for the rest of my life, but I have to.

Damn, sorry to hear that, Ben. It doesn't sound very professional of these guys. They really need to have their business in order next time.

Maybe you're right. It's still not chill with that constant pressure in my head, but I wouldn't rate it 8/10 like yours.

Dr. De Ridder seems like a very nice guy. It seems he goes to great lengths to find something that might work for you. Are you also going to discuss the upcoming Ketamine/HD-tDCS pink noise trial with him? I've just made an appointment for the 30th, and maybe, just maybe, I'll participate if the initial results from the New Zealand study point to the right direction.

I like your determination, Ben. It's tough, but this situation really demands the best of us. And you're winning at the moment, even if it doesn't feel that way. Your girlfriend must be pretty proud to have someone like you around

 

[Ben Winders]

Damn, sorry to hear that, Ben. It doesn't sound very professional of these guys. They really need to have their business in order next time.

Maybe you're right. It's still not chill with that constant pressure in my head, but I wouldn't rate it 8/10 like yours.

Dr. De Ridder seems like a very nice guy. It seems he goes to great lengths to find something that might work for you. Are you also going to discuss the upcoming Ketamine/HD-tDCS pink noise trial with him? I've just made an appointment for the 30th, and maybe, just maybe, I'll participate if the initial results from the New Zealand study point to the right direction.

I like your determination, Ben. It's tough, but this situation really demands the best of us. And you're winning at the moment, even if it doesn't feel that way. Your girlfriend must be pretty proud to have someone like you around

You are undoubtably one of the nicest people around here.

My girlfriend is proud that I more or less have gotten out of my very very bad period that I had about 2 months ago. I was stuck very deep in a very bad place. But she is also not a big fan of over-investigating and she even wants me to limit my time on Tinnitus Talk as I don't always read the most inspiring stories here.

That said, I'm determined to find what this is and hopefully find a solution. Yes, Ketamine / HD-tDCS is definately on my list of questions to ask De Ridder. Especially because he mentioned it in my last Zoom call with him. He said that the current UZA tDCS is not really yielding good enough results. But I still want to try.

You are so right when you say that "this situation demands the best of us" - as this is such a niche (even tinnitus is a niche, imagine the low frequency version) we need to fight to be heard and fight for a solution. It will not be offered to us on a silver platter.

 

[Christiaan]

You are undoubtably one of the nicest people around here.

My girlfriend is proud that I more or less have gotten out of my very very bad period that I had about 2 months ago. I was stuck very deep in a very bad place. But she is also not a big fan of over-investigating and she even wants me to limit my time on Tinnitus Talk as I don't always read the most inspiring stories here.

That said, I'm determined to find what this is and hopefully find a solution. Yes, Ketamine / HD-tDCS is definately on my list of questions to ask De Ridder. Especially because he mentioned it in my last Zoom call with him. He said that the current UZA tDCS is not really yielding good enough results. But I still want to try.

You are so right when you say that "this situation demands the best of us" - as this is such a niche (even tinnitus is a niche, imagine the low frequency version) we need to fight to be heard and fight for a solution. It will not be offered to us on a silver platter.

Your girlfriend is definitely the real deal Her concerns does show how much she cares about you.

I don't know if you saw this clip before, but I think it's very nifty to check this out. It's an interview with Dr. De Ridder, in which he talks about the theory & practical use of his next project on Ketamine/HD-tDCS stimulation. The part about tinnitus starts at 38:07. Spoiler alert: he mentioned something about hoping to address the loudness of the tinnitus, not just annoyance due to tinnitus per se.



You're definitely right on the need to fight to be heard & to find a solution. I would also like to think we are building a stronger, more resilient character that will survive the test of time and, eventually, we'll be cruising through life as winners once we're cured. It sounds like an over-the-top Hollywood ending, but nothing's too crazy with the kind of reality we're already dealing with

 

[Maria Francesca]

I have new behaviour to report

Hello, do you think this new behaviour is related to Cat's Claw? I have bought it to add to my antiviral supplements, but I am hesitant to take it based on your feedback.

 

[Ben Winders]

Hello, do you think this new behaviour is related to Cat's Claw? I have bought it to add to my antiviral supplements, but I am hesitant to take it based on your feedback.

Pretty sure it's more based on the fact that I have been sleeping without any noise generator on at night... Pretty much every time I sleep in complete silence, on the 3rd day I will have a louder buzzing.

Pretty sure this is classical residual inhibition at work (or the lack thereof if I sleep in total silence) and has nothing to do with either Cat's Claw or Tegretol.

That said, I stopped Tegretol already - I'm really tired of poisoning myself with heavy anti-epileptic drugs with nasty side effects that probably don't even work for (my) tinnitus anyhow > I took Tegretol for 2 weeks until 600 mg/day dosage and did not notice any improvement. I'm not expecting it to miraculously start working after 1 month usage.

 

[Maria Francesca]

Hello, one ENT has told me my humming is of vascular origin, and that this is why I can modulate it by neck movements.

I found this paper now:

Single-Center 10-Year Experience in Treating Patients With Vascular Tinnitus: Diagnostic Approaches and Treatment Outcomes

It says many vascular related tinnitus come from jugular bulb and can be addressed surgically. And it says:

"High jugular bulb involved the right ear three times more frequently than the left."

I have my humming in the right side. Where are yours? Just to have some statistic to possibly validate the hypothesis.